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I have spina bifida - May 26th 2011, 07:45 AM

I have spina bifida, club feet, and hydrocephalus, and was wondering if anybody else is going through what I go through on a daily basis
   
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Re: I have spina bifida - May 26th 2011, 03:28 PM

I'm not going through this myself, but I have a best friend who confided in me that has Spina Bifida. You don't need to mention hydrocephalus as that is always included in a Spina Bifida diagnosis. Also, because of the lack of muscle mass, it would be impossible to have club feet at the same time. The reason I know that is because my friend works at a camp for people with Spina Bifida and knows a lot more. None of them have club feet. Now that I think about it, a person with Spina Bifida wouldn't mention hydrocephalus as if it was a separate thing, because every person that has Spina Bifida has hydrocephalus. And don't tell me that by saying that, I don't know what it is. I do. It means that you have a shunt to drain fluid from the brain.

I feel really strongly about this issue and I know a lot about it. Plus, I'm studying to be a psychologist and help those with disabilities, so I know quite a lot about different kinds. There may be some I don't know yet, but I'm still learning.
   
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Re: I have spina bifida - May 27th 2011, 04:26 AM

No offence, but, you really don't know what you are talking about!
I know plenty of people that have spina bifida, that do not have hydrocephalus, it is separate from spina bifida, not everyone with spina bifida has hydrocephalus, and not everyone with hydrocephalus has spina bifida.
as for having club feet, you are incorrect there too, alot of people with spina bifida have club feet. if you don't believe me, look it up, and having lack of muscle mass, has nothing to do with club feet. club feet, is caused by bone, not muscle.
   
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Re: I have spina bifida - May 27th 2011, 03:42 PM

I do not havespina bifida, but I do have CP which will be a life long condition.




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Re: I have spina bifida - May 27th 2011, 06:14 PM

Just so you know, I meant bone, not muscle. Because of the lack of bone mass in the legs and feet, I cannot see how club feet can be possible. I said muscle only because I was talking to someone else as well on my phone and I hadn't quite woken up fully yet. I'm not saying bluntly that you're lying, I'm just finding this hard to believe.

And according to my friend that has the worse case of Spina Bifida (I don't remember what exactly it was, I want to say occulta?) he says that the hydrocephalus is a must for people with Spina Bifida. If you can provide me proof of these two things, I'm willing to learn.

I've been with my friend for two years and I've helped him with life situations many times. In an effort to stay on topic, if you could give us specifics, maybe we can help you. If you would like to PM me, please feel free to do so.
   
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Re: I have spina bifida - May 28th 2011, 05:11 AM

well, things like that are probably difforent depending on the type of spina bifida one has as well... I have myelomeningocele... club foot is just misshaped bones, so it can happen to pretty much anybody, it doesn't matter how dense, etc. their bones are...
   
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Re: I have spina bifida - May 28th 2011, 05:12 AM

I have alot of friends with CP. I also used to babysit a girl with severe CP...
   
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